FRAME is a web-based educational library and resource created by Positive Exposure that changes how medical information is presented to health care professionals in training, clinicians, families and communities.
FRAME utilizes brief educational films hosted on the Positive Exposure and partner websites. What started as a pilot in collaboration with students in the Joan H Marks Graduate Program in Human Genetics Sarah Lawrence College with five genetic conditions – and formerly entitled The New Face of Genetics – FRAME is growing into an important compendium of genetic conditions that will change the way students in health care fields see and experience individuals living with genetic differences.
Each brief film will give future genetic counselors, nurses and physicians a more robust understanding of rare genetic conditions, while modeling an attitude of respect for the humanity of patients. Viewers will get to see participants talk, move, and smile, a departure from the “patient-as-a-specimen” model that most educational medical literature utilizes. FRAME presents individuals living with specific genetic conditions in a manner, which captures their humanity and beauty.
In each film, participants connect differently with the audience as they introduce themselves to viewers and then demonstrate hallmark characteristics of their condition, not in a clinical, but in a “ natural, real life” manner. This provides each visitor to the site, the opportunity to study and fully understand a genetic condition on a real, dynamic person, bringing a new perspective to medical education and the learning process. The script for each segment of the film will reflect the most current information on each condition as well as input from our team of well-regarded geneticists, specialists, families and support groups.
The goal is that, once completed, each segment will be used by health care providers in training and professionals as a tool to learn, understand and experience the distinct characteristics of the specific genetic condition. It will be an important teaching and learning tool that highlights humanity alongside key medical information. Additionally, FRAME can be utilized by families, therapists, educators, communities as well as a tool for transition medicine as an increasing number of young adults living with genetic conditions now enter into the adult health care system.